Experience mapping the dementia diagnosis journey

Rik Williams, UX Architect, talks about the process and findings of experience mapping research for the dementia diagnosis journey. Part of our New Deal on Support.

Capturing an opportunity to improve our services on a draft experience map for someone worried about their memory.

We’ve been working on a project we’ve called Customer Experience Mapping. Its aim is to provide the Society with well-evidenced customer needs and experiences. In particular around the journey to, and through, a dementia diagnosis. This includes for carers and healthcare professionals, not only people with dementia.

We need to have this base of understanding so that we can join-up our approach to providing the New Deal on Support. This is our strategy to design and enhance dementia services so that they meet your needs.

What is experience mapping?

An experience map is a powerful tool that helps people understand and empathise with the lived experiences of a product or service. Illustrating how people think, feel and behave at each stage of their dementia journey will help the Society prioritise what’s most important.

What we did

We designed research activities to explore all aspects of the dementia diagnosis journey. This included looking at what happens before, during and after diagnosis. What people experience on and offline when seeking support. Also what happens in and outside of the Society’s support services, in particular in the healthcare system.

Research scale and methods

44 people interviewed across England and Wales;

1.2 million online conversations about dementia analysed. ‘Social listening’ is the process of identifying and assessing what is being said about a company, individual, issue or brand on the Internet.

400 online survey responses collected;

3 focus groups were conducted with Dementia Support Workers.

We then analysed this data in the project team. This included workshops to bring experts together from diverse teams from across the Society. This was important so that we could include their expertise in delivering dementia support from the outset. This approach also helps ensure that the Society gets the most value from the research.

What we learnt

Poor experience with GPs

GPs are the first link in the diagnosis chain, but often they often lack:

dementia training;

empathy, usually giving no explanation of the diagnosis or prognosis;

time (10-minute appointments);

awareness of the Society’s dementia support services.

This can mean that patients are often not taken seriously. This leads to a lack clarity about the dementia diagnosis journey, anxiety and stress.

I’ve had to insist, be proactive, fight for his diagnosis — Carer

Diagnosis journey is complex

Most people stumble through diagnosis, having to find information for themselves. Almost no one was honestly told their prognosis. Whilst everyone’s diagnosis journey is unique, some common patterns emerged:

Carers and family look online for help but often don’t find the best information;

People are often living in denial of the symptoms, delaying treatment;

Carers struggle with the high financial cost of care and feeling guilty.

Postcode-lottery accessing dementia services

There aren’t enough dementia specialists to help people find effective information and support. Typical patterns include:

Not everyone has access to a Memory Clinic;

Community support is less available in urban areas;

Geographical isolation can hinder access to help and support;

Local support is inconsistent – some agencies work together, others don’t.

Wellbeing is a qualitative experience for patients and isn’t easily quantifiable and demonstrable to care providers – so it’s hard to justify the specific funding teams should get — Community nurse

Who does the Society help?

Many people felt the Society only helps those already diagnosed with dementia. There was also uncertainty around when to contact the Society. Whilst we have high brand familiarity and trust, there is a low awareness of who we help and at what stage. People wait for a crisis to occur, even though we can help sooner.

My feeling is that the Alzheimer’s Society is only for people with Alzheimer’s, not for people wanting to find out more about it — Worried/undiagnosed

Training and education is needed for healthcare professionals

All GPs and Doctors admitted to not having been formally trained to work with dementia patients. Care workers also felt ill-prepared and lacked sufficient training. This is despite dementia set to affect 1 million people in the UK by 2022.

I can’t remember any teaching in medical school or after that’s been useful in dealing with dementia – you just pick it up on the job — Locum Doctor

Improve support content for healthcare professionals

Specialist health care professionals all use Society dementia factsheets. They say that they find the content very useful when working with patients. ⅓ of people asked said the Society should provide more training, content and materials. However, GPs usually:

quickly Google to find up-to-date information and help;

choose content that appears first in search results (not always the Society’s content);

are inundated with support materials from lots of charities, so it’s hard for them to stay current.

We used to get a lot of leaflets given to us by various charities but we found the services have moved on and the leaflets are now out of date — GP

How we will use this research

Presenting the diagnosis experience maps across the Society. This is so that the research can affect evidenced-based changes to our dementia support services and campaigns.

The Customer Experience Mapping project has recently delivered 7 experience maps to the Society. These map the top-tasks, experience, frustrations and opportunities for people:

worried about their memory;

newly diagnosed;

providing primary care as a partner or spouse;

providing primary care as a family member;

carrying out professional care;

making dementia diagnoses;

advising people about living with dementia.

These experience maps are shaping our projects to deliver on the New Deal on Support. We are already using the research to:

align our World Alzheimer’s Day campaign to the needs of people living with dementia;

evidence a transformation of our digital support so that it joins-up better;

improve the efficiency and reach of our dementia support workers.

We will provide further updates about the impact of this research and the effect it will be having on the New Deal of Support over the coming months.

Since you are here…

…we’ve got a small favour to ask. We are always looking to improve our services in partnership with people affected by dementia. Would you like to take part in future design and research activities (including paid research)? If yes, then complete this three question form so that we can contact you.

Related

Comments

I had a look at the death certificates for my wife’s, (who suffers from Alzheimer’s), family and found on her father’s side, her Great Grandfather died of “Senility”, while another two-“decline” and “old age”. On her mother’s side, her Grandmother-“senility”, as was her 2x Great Grandfather and Great Grandmother (father and daughter), I might add the last two are not blood-related to my wife’s Grandmother.
As I am worried about my children and grandchildren, looked at my side and found only one was diagnosed with this disease, and that could be he was a house painter/plumber in the 19th. centuary. Is there any research into dementia being passed down through the generations?

Thanks for your story. In response to your question: “Is there any research into dementia being passed down through the generations?”. Our Genetics of Dementia guide has a section on “Is dementia hereditary?”: